Major Neurological Event

Yes… It’s a migraine, not a headache. About 2 weeks ago I saw an article that said something like it’s not a headache. It’s a migraine. It’s a major neurological event and that kind of stuck with me. I can’t find the article and I didn’t have a chance to read it but it’s so true..

I’ve been a migraine sufferer all my life. I can remember back to being about 4 or 5 years old and having massive headaches. My pediatrician back then said that I had sinus headaches. It wasn’t until my early twenties when I saw another doctor and described my headaches and he said it’s classic migraine at that point. However, the doctor did not want to prescribe anything because of my allergies. It wasn’t until I was in my forties that I actually went back and saw another doctor and actually started getting help. No one has really diagnosed what type of migraines I got? I described them as being chronic. And yes, they can last a couple of weeks. Sometimes they will be on and off for a few weeks. This one this week started Monday night. I got home from work. It was almost 5:00 p.m. I tossed some penne and meat sauce on and started to eat. My neighbor asked me if I’d give them a hand for a moment to check his tail lights. I went outside for less than 5 minutes. Came back in. I was freezing. I crawled under my electric blanket to try to warm up a little and I took a fioricet as I was just starting to get an aura. I think I fell asleep about 6:00 p.m. and woke just after 9:00. My head hurt worse and worse. I started getting nausea. I then took sumatriptan around 11:00 p.m. and then I took a little medical marijuana and put my head down on a hot water bottle at about 1:00 a.m. I was up at 5:00 a.m. like normal. Got ready to go to the office but the pain was too severe. I was also so nauseous that if I put anything in my mouth it definitely would have come right back out. I called out sick. I sat in a chair with the TV on very very low. Just so I would hear something. This is how I spent my entire day Tuesday. In addition I took more sumatriptan and more medical marijuana on Wednesday, I woke up and I went to the office. Although the migraine was fully concentrated on my stomach and I felt like I had a migraine hangover. On Thursday I once again went to the office. I felt a little bit better and Thursday night when I returned home I started getting the aura again. I then took another sumatriptan. I went to bed after a late dinner. Friday morning I woke once again. I have an aura. I have stomach pains and it feels like something is poking me in the back of the eyeball and the back of my brain stem. This is all normal to me. This happens all the time. This is clearly not a headache. What I forget to mention far too many times is in addition to the aura, and the nauseousness is I sometimes have a loss of speech. I forget words and stutter my speech. Also vertigo. I might be standing there talking to you and it’s like all of a sudden. Somebody just kicked my left foot out from under me. I’ll start tumbling over. Fun fun….

Next time someone says how is your headache? Thank twice before you answer…

Pain in the A$$

Yes a Colonoscopy is a PITA. Not the actual test but the prep. Not eating correctly for a day then a liquid diet followed by hours of you butt doing dry heaves is not an enjoyable time.

However my polyps were benign and i dont have to go through this for another 5 years. I feel alot better already.

Finally!

I had a seriously bad year in 2020. Massive migraines muscle spasms asthma was killing me (or so i thought, more on this later) etc etc…

The year had started off on a depressing note, as the company i work for shut down one of its brands, then sold the beautiful building we built, we will now be renting a space within and its really sad. So we were rushing to move our stuff to our side of the building when america shutdown. I started working from home mid March and spent the first month or so in a constant migraine, mainly due to stress, and having to get through many issues with most of the staff never having to work from home in the past.

Then…. I started putting on weight. I had lost 30 pounds in 2018 and i gained back 35 sometime in the year, i started noticing that my asthma was getting worse. I cant breath when taking a very short walk (albeit uphill i was able to do this all of the previous year with no issues) I actually had days that i would take a 30 minute break and lie down with my CPAP on as my chest was killing me and it was soooo hard to breath.

When i saw my PCP october she told me i should have a colonoscopy as im 54 but theres a new test Cologuard. I took this and its simple poop in a bucket and mail it in. Nice! No prep no time in the hospital etc. love it. Saw my rheumatologist next. Knees are starting to bother me already so we ordered my Euflexxa. We talked and now hes added CPS and depression to my list. Ive had minor bouts of depression since i was much younger so its not something i talk about. CPS (Centralized Pain Syndrome) was new this year although i thought back a couple years and realized i must’ve had it alot longer, just its alot worse this year. We also talked about my weight gain, and i am off to see the gastro.

Cologuard test came back positive. For what? Who knows i have to do the colonoscopy to find out….. ok scheduled….. Talked to PCP again after reading up on the net, i bumped up my Co-Q10 and the swelling in my ankles went down. its been YEARS… Some of the sensitivity from the CPS has lessened and thats a plus.

Gastro sends me to his assistant who puts me on Saxenda on 11/30. I start to lose weight. Today, almost 2 months later im down 22 pounds.

Last night i saw a video that was posted in 2017 talking about the way the brain works and how some receptors stop talking to others and thats why we are in pain all the time. Makes total sense its blocking our natural opioids so of course thats why the Tramadol stopped working.

I noticed my windows are always wet during the winter and saw online that propane is a moist heat and when cooking you should always have a vent fan on, this was in VanLife and RV videos. I ordered a dehumidifier and saw that the house was at 87% humidity. In 2 days it was down to 50+ %. Guess who can breath now?

Things are starting to look better, ill posted my results from the colonoscopy when i receive them.

the shitshow thats 2020

So my lungs have been hurting all year. On and off mostly but i do notice that on bad asthma days those are the worst. Ive actually had such a hard time i grabbed my CPAP and had to lay down, usually wind up napping when i do this. So i made an appointment and the doc wants me to do another Pulmonary Function Test, yay. If you dont know you sit in a plexiglass box and blow into a straw. Take a hit of your Albuterol and do it again. I did this a couple years ago and i was ok. Doc says if it not my asthma maybe its my heart. Ok you got a point, i gained back those 30 pounds i lost in 2018….

So just prior to this i made an appointment and saw my Rheumatologist and told him i think i may have Fibromyalgia and here are some of the accompanying symptoms that i had written down for him. He mentioned that this year has been stressful and i wholeheartedly agreed. When i mentioned that i gained those 30 ponds he asked if i was interested in seeing a bariatric doctor. Even through the mask he could tell i was giving him a look like he had 18 eyes and 98 legs. He quikly responded with, “The last thing they want is surgery, they will send you to a nutritionist etc first” So… I agreed. Friday was the bariatric appointment as well as the “Covid pre-op” prior to the aforementioned PFT.

Since i had 2 appointments only a few hours apart i took the day off. Walk into bariatric doc and nurse says, ‘so you are here to discuss surgery’ No. He leaves. Doc walks in. “So we offer 3 different procedures for weight loss”. Um no. Long story short i and going back to visit his nurse practitioner for possible medicinal help. You see i believe its all the medicine that im on since i was 180lbs in 2003 then when i got got sick in 2007 ive ben gaining weight ever since. I stopped 6 of my pills in 2018 and dropped 30 lbs. So lets reassess my meds or add something to the mix that can help.

I go back a couple hours later for my covid pre-op. On the phone to check in they say, “wait is this for the procedure NEXT friday?” eh yea.. “Oh well thats too early it must be done within 5 days of the procedure” and so the migraine begins.

On tuesday i will go for the covid test followed by a blood test for 2 seperate doctors. in 2 weeks ill see the nurse practitioner next friday the PFT plus i have 3 appointments to get my Euflexxa shots done.

Ok i’ll stop ranting for now i tool my Fioricet and it didn’t help so now onto a little THC and its helping to ease the pain. Maybe a little more but thats gonna wanna make me nap. See y’all later.

advocacy, conditions, thoughts

I made this decision in 2011, and i now have more conditions. Do i quit? NO! I push on and help more people with more issues as i learn them myself. I have to say Thank you for the awesome words Tiffany.

After reposting this on my facebook page i was thinking about it. My conditions….

Chronic Migraines

I can remember migraines as far back as i can remember. I think i was 3 or 4, mom gave me tylenol. At some point a doctor said ‘sinus headaches’ I saw another doc in my 20’s who said classic migraines. I looked it up. Yes. He was afraid to give me meds as i have some bad allergies. Told me to goto the hospital, and as a result i ate extra strength tylenol for years. Sometimes every 2 hours for weeks. This can seriously damage your liver, i had no idea. I have since got them in check.

Asthma

I really dont know how long ive had it for but i can remember having a couple attacks in the 80’s/90’s and i had no idea what was happening, or what it was. I started jogging in my early 40’s and got winded. Told the doc and well it was obvious when i started hearing the symptoms….

Psoriasis

Two major disasters happened in my life in 2005. By 2006 i broke out, tried everything. Saw a derm and was diagnosed in 2007.

Psoriatic Arthritis

Starting in 2009/10 i would wake up in pain. I blamed the dog as he always fell on my and pushed up against me when he was sleeping. If you have never experienced this a 70 lb pittie is like a rock. One day in 2012 i looked at my fingers to see if it was time to cut my nails. My fingers are crooked. I went to a Rheumy he said ah! ya have a little Osteo, relax. I walked out the door and found another Rheumy. I was right, Psoriatic Arthritis. The 1st doc had run blood tests, no xrays, nothing, quack….

Raynauds

Routine visit to see my Rheumy, its 90+F outside. Cooler than 70 inside (im pretty sure) He starts the exam and sees my toes. Do your toes always turn colors like that? Um yes? Raynauds. Thx.’

Nickel Allergy

I was on Stelara for about 1.5 years and my knuckles arent clearing on my right hand. Doc asks for an allergy test. I quit eating oatmeal every day and i clear up 100%

Brain Aneursym

Seeing my neurologist. I had an MRI, now he asks for an MRA. Guess whose not right in the head? Yea its a small one, we just have to keep an eye on it. When they first saw it my blood pressure was high due to no longer eating oatmeal everyday. Now its 4 BP pills a day. Thx. Also cholesterol went through the roof so onto statins.

Massive Muscle Spasms

Yes. onto statins and now massive spasms.

3 Herniated discs

Quite common with Psoriatic Arthritis, these are also great for muscle spasms as well as numbness/tingling, i haven’t felt my thigh in years.

Sleep Apnea

My ex girlfriend told me i had apnea. When we split i went for a test. Guess who has severe sleep apnea. Yes this train wreck right here…

Tactile Allodynia

Not diagnosed by a doctor yet but i see the symptoms. Its me 100% i need to move to a warm climate and join a blind nudist colony. Anybody sees this body they’re gonna faint or run.

Fibromyalgia

Also not diagnosed yet but ill bet my last dollar, and it seems to be associated with…. Yes you guessed it Allodynia.

so even with this laundry list thus far (there maybe things i dont know or dont think about like high blood pressure high cholesterol etc) one thing holds true, and thats what was said for the 2020 HealthEVoices virtual conference, and that is Advocacy doesnt stop!

Another thought….

So after writing about Tactile Allodynia i was thinking about how i could never wear socks to bed….. Yep! In the past i had thought that my socks were too tight or whatever but no. Even those stupid things that you get in a hospital will bother me.

last week i was starting to write down the things that have happened so i have a list for the doctor. My fingertip felt like it was burned. I scratched my head and it hurt. It felt like someone had hit me with a bat. It was sooo sore.

Last night i was cooking dinner when i jumped backwards because i felt something running up my leg. No nothing there. Later i went to bed i couldnt fall asleep rolled over and the sheets ran over my big toe. I literally jumped 3 feet in the air. It felt like i just dragged something over burnt skin.

Fun fun. Every day its something new. I guess this keeps life interesting. You know like your blindfolded playing darts, something else will break but who the hell knows what and where.

Light Bright Migrainy Day

So i woke as normal at 530 this morning and i felt a little off. Pressure on my right temple, then im sneezing. Blow my nose like 50 times. Hmmm i left the air purifier off because i had the windows open the last 2 days, but had to turn the a/c on yesterday afternoon…. That could be it, yea yea thats it…

Coffee, more runny nose etc. Pressure is building, now its 7am. Aura sets in. Im looking around the room and yea i turn my head and i see trails. Wonderful. So i throw a couple eggs in a pan put on another cup of coffee and pop a fioricet. Just as im starting to feel nauseous i eat an egg sandwich, and start on that second cup of coffee.. I drink strong coffee. As dark as i can get it.

Now the pressure sets in, like someone pushing on my head, crushing it. Please medicine, please work for me.

Its been an hour, ive eaten and i can still taste the fioricet. Heads gettng worse. I grab a medicated honey lozenge (weed thank you etain these are awesome!), pop on my cpap mask and head back to bed.

Two hours later im back up. At first no pain. Hmmm maybe….. I move my head. ooops no its still there. damn. Get up, grab another cup of coffee. Munch on a couple cashews.

Damn! Its noon. Ok ill grab a piece of cheese as thats good for the nausea. Ok shower. Hmmm ill go outside and sit with the sun on my back for a few. Collect some D3…. Back inside. Back out…

Back in. buttered noodles for dinner i can’t do much more. More coffee more fioricet, and eventually more weed. Now its 10pm. The day is finally over and i pray this is gone tomorrow…

Allodynia

Yes you read that right. Over the past several years getting very bad at the moment i cant stand wearing a necklace and the waistband on my pants/underwear, my watch after a couple hours drives me nuts. It hurts! Since my daughter has said she wouldn’t be surprised if i had fibromyalgia i was talking to a friend and said hey does this sound familiar? She pointed me here: https://www.verywellhealth.com/allodynia-definition-and-types-fibromyalgia-715929 yes its very much Tactile allodynia.

The only issue i have is that i must wear the necklace. Well when im out anyway. You see its a medic alert necklace, without it im about good as dead if i have an accident as im allergic to Morphine, penicillin, aspirin and nickel so far. Ive checked the chain theres no nickel in it so i couldnt figure out why it hurts so much. Nickel is in the button on your jeans and literally burns when it touches my skin. For years ive either bought pants where the button is sewn on or painted the back of the snap on my jeans with clear nail polish. Simply wearing a tshirt thats tucked in will help but thats not always wanted.

Ill tell you, having a broken immune system can be exciting you are constantly getting new issues, learning things you never knew existed!

Asthma sucks

So i saw my PCP on friday. I haven’t been there in quite awhile, so i explained how this year it has been hard to breathe. Last year i carried boxes up the hill while moving in and i was fine. It was hot but i was ok. This year however i walk to the mailbox and i’m dying. I need my inhaler. I had tried Symbicort over the winter and it wasn’t helping. I did however have some advair so i’ve been using that in the mornings and its been, ok. Don’t get me wrong i walk to the mailbox and i still cant breathe but just sitting here it doesn’t feel like a weight on my chest like it had.

She decided to try me on Singulair. First dose on friday. Saturday i was lost. Dazed and confused. No energy and i had planned on doing about 100 things. Nope no can do. I lied there watching YouTube all day. Went outside sat in the yard, then back for more youtube. Was it really the Singulair? Or had ai taken too much medical marijuana because my back was bothering me?

Here it is sunday evening and i think i am feeling better. My chest is still a little heavy but the information with the medicine says it doesn’t work immediately so….. also, I didn’t need the weed today. We will see.